** WARNING….. THIS POST CONTAINS PHOTOS OF MY SURGERY**
Read at your own risk, you guys know me by now….. I love giving you all the gory details!
What is excision surgery I hear you ask….?
Excision surgery is a type of surgery (done by skilled, specialist surgeons) which involves physically cutting out endometriosis lesions at the root and not leaving the disease behind. Ablation, which is a more common surgery, is the burning or vaporizing of endometriosis at the surface with a laser or heat gun, leaving the roots and other scar tissue behind. Excision surgery is much more invasive than ablation, but it provides long term benefits as it removes the root of the problem. Fewer surgeons specialise in the excision of endometriosis as it is a highly skilled procedure. Mr Khazali is an expert in excision surgery and I feel so lucky to have been under his care.
This is the list of the findings during my surgery by Mr K, with a little explanation of what all the fancy words mean!
- Frozen pelvis (lots of inflammation, scarring and adhesions over all the pelvic organs, causing them to be fixed and immobile. The pelvic organs: uterus, tubes, ovaries, bladder etc should normally be mobile and free to move).
- Appendix involved and abnormal in consistency.
- Uterovesical fold (a fold of peritoneum from the uterus to the posterior portion of the bladder): Deep infiltrative endometriosis on both round ligaments (part of the uterus) and on multiple areas on the peritoneum (lining of the abdominal cavity) of the uterovesical fold.
- Left ovary: 5 separate endometriomas (ovarian cysts formed by endometrial tissue and blood), buried very deep and under the peritoneum, almost abutting the bladder.
- Right ovary: Single 5cm endmetrioma, completely adhered (stuck) to the side wall of the pelvis.
- Left fallopian tube: initially gave the impression of hydrosalpinx (blocked/imflammed fallopian tube filled with fluid) but after mobilising the ovary and removal of adhesions, went back to a normal position and showed no signs of hydrosalpinx.
- Right fallopian tube: Endometriotic nodule (deep endometiosis tissue and scarring causing lumps) on the serosa (smooth tissue membrane) but not hydrosalpinx.
- Dye went through both tubes freely at the end of the operation (which means both tubes are now open and clear).
- Both ovaries adhered to the sigmoid colon densely (part of the large intestine that is closest to the rectum and anus).
- Full thickness endometriotic nodule in the distal sigmoid (the left side of the colon, including the sigmoid colon). 11cm from the anal verge. Measures around 4cm in length (will likely need to be removed in the future).
- Deep infiltrating endometriotic nodules on both uterosacral ligaments (major ligaments of the uterus), rectovaginal septum (separates the vagina from the rectum) and both pelvic sidewalls.
All the above issues mean I had severe endometriosis, giving Mr K a lot of work to do to make my pelvis “normal” again! The endometriosis was worse than I had anticipated. We knew going into the surgery it was bad, but I never imagined it would be this bad!
So…..what did he actually do?
- Excised all endometriomas from both ovaries.
- Mobilised both ovaries (which he writes as being very difficult, due to being stuck deep into the pelvic side wall and very close to my bladder).
- Removed appendix.
- Excised endometriosis from the right fallopian tube serosa.
- Excised deep infiltrative endometriosis from the uterovesical fold.
- Shaved the endometriosis nodule off the back of the uterus, separated uterus from the bowel. Rectum completely mobilised and freed.
- Excised deep infiltrative endometriosis from both sacral ligaments, both pelvic side walls and back of the vagina.
- Excised deep infiltrative endometriosis from the right fallopian tube.
- Suspended both ovaries (using a stitch) to prevent adhesion formation. Also suspended uterus during surgery.
- Sigmoidoscopy performed (looking inside the rectum and lower colon with a camera).
- Dye test performed on both fallopian tubes to check they are open.
WHAT A GUY!!!! He did all this through 4 tiny holes in my abdomen…….utterly incredible! I have no ides how all this is possible using cameras and instruments without cutting someone open!!! Laparoscopic surgery means quicker recovery for patients and scars so small no one will even notice them in a few years. Although I like to think of my scars as a reminder of the journey we have been on. I am sure I will look back on them in years to come knowing they were worth it and being thankful for having them.
Mr K said I am the first patient he has used ovary suspension on post operatively. However, like I said in my previous post, I had to have the ovarian suspensions removed a day early as I literally couldn’t stand up straight due to how much they were pulling and the amount of pain they were causing, mainly on my right side. As soon as they were out I felt normal again! Hopefully they were in long enough to prevent my ovaries sticking to anything during their healing process!
So here is the interesting part…… The surgery pictures! I had loads of them, but I have only chosen some to share, in case its too much!
The first picture shows endometriosis and adhesions on the underside of the bladder which is covered in peritoneum, the red lump below it is the uterus. The adhesions are the white tissue (the area between the two instruments). The second pictures shows the area after the tissue has been excised/removed. You can see the top of the uterus (red lump below the excised area) and part of an ovary (white lump on the right hand side of the picture).
The third picture (above) shows endometriosis on a fallopian tube. The white bit is an ovary. The endometriosis is the small white spot in-between the two instruments. The forth picture (above) showing the purple colour in the middle, is actually the dye used through the fallopian tubes. This picture shows the dye coming through the end of the tube, you can also see part of the ovary too (white bit).
The next picture I find really interesting, as it shows how abnormal my uterus was!!! These pictures show the uterus in the middle (round organ) with both fallopian tubes hanging down from each side and the ovaries. A normal ovary is the size and shape of an almond. Ovarian cysts are growths inside an ovary.
My uterus is the first picture and the second picture is how it should look in someone without endometriosis or scarring. You can clearly see all the damage from adhesions/excision on the surface of my uterus. You will also see the very enlarged size of both ovaries, which had been stretched from the multiple endometriomas. The second picture is actually after the cysts had been removed. Both ovaries are larger than they should be but will go back to a normal size during healing. In the second picture you can barely see the ovaies as they are normal in size and small, just visible on the left side of the picture (white bit).
A normal uterus measures about 3-4 inches by 2.5 inches, so its about the size of your fist. My endometrioma was 5cm on my right side and 5 smaller ones on my left side. My uterus will look better in the future but likely will be permanently scarred from surgery. Note you can also see the excised area of the peritoneum covering the bladder behind the uterus in the picture on the first picture (as discussed above).
The next picture shows my ovaries. You can see the thin tubes (fallopian tubes) and the ovaries (white bit). Both ovaries look much larger than they should due to having been stretched by the cysts. The second picture shows the inside of the ovary following excision of the endometrioma. An endometrioma cyst is usually filled with dark, thick blood and is therefore called a “chocolate cyst”. An endometrioma is a sign of severe endometriosis and can be very painful, even when small in size.
The process of removing endometriomas ultimately means damage to the ovary and egg reserve. However the risk of leaving them there means that they will continue to grow and the ovary is unable to release an egg/eggs not able to be collected for IVF due to the size of my cysts. So they had to come out. The risk of them growing back in the future is quite high, but for now I am cyst free. The risk of excised endometriosis coming back is relatively low compared to ablation, where the reoccurrence is high, as the root of the problem remains. Usually women get put on the pill or have a coil following excision surgery, to stop any new growth of endometriosis, but obviously this is not a solution for someone who wants to get pregnant!
The 4cm nodule of endometriosis in my bowel will likely have to be removed in the future, as it already causes me with bowel issues and it could cause a bowel obstruction. But Mr K said to try and have a baby first and deal with that at a later date… which will mean more surgery and more bowel prep!!!! I completely trust his advice so will be lead by him on this. I am pleased to report that since my surgery my bowel symptoms have dramatically decreased which means having a poo is almost pain free now!
My recovery really has been excellent. I have found it difficult to pass urine over the last few weeks….. it often feels like I really need a wee and then a dribble comes out or I have to sit for a while to completely empty my bladder. But it has been getting better each day. My pain was moderate initially but I only had to take strong pain killers for a week and then it was more of a dull ache or shooting pains every so often. I still have an issue with my right side, feeling shooting pains or sharp pains if I try to do too much. I had a little vaginal bleeding/discharge for a few days, which was to be expected. Sleeping is always an issue after surgery as I had to lie flat on my back. It was extremely difficult to roll over or sit up by myself initially. I suffered with quite a lot of nausea this time round and hot sweats at night…. like the kind when you wake up and you have soaked sweat through the sheets. Apparently this is because my ovaries have been fiddled with during surgery, which results in hormone unbalance and the menopause sweats!! Luckily this only lasted two weeks and then I was back to normal.
I wasn’t sure when to expect my first period, but it came and went without excruciating pain. Although it was a little more painful and heavy than my periods were before, but it was only 3 weeks after surgery. I have also seen signs of ovulation at the correct time of my cycle which is reassuring. I have also just had a second period which was back to my normal flow, but was very panful for the first day. So all in all my body seems to be working ok! Phew!!!
I couldn’t have wished for a better recovery and I have recently bona back to work, which makes me feel back to normal again! Although I continue to be very tired. I still cannot believe just how fucked up my pelvis was!!!! Excuse the language…. but it really was a complete mess in there and must have been accumulating for so many years. I am so grateful not to have suffered as much as others do with this debilitating disease. It is so important to be aware of your body. I am just happy that we have finally found out the cause for my infertility and hopefully fixed the problem for now!
Here he is again…. One more time…..Mr Khazali! I know you have seen this picture already, but I couldn’t help it!
Doctors are just normal people who are excellent at what they do. They have a heart and they want to help us. The NHS is an amazing resource that we are so lucky to have and we should be very grateful for everyone who works within it. I cannot thank all the surgeons, anaesthetists, ODPs and nursing staff who have looked after me this year, having had 3 surgeries there have been many different people!
I am sorry if the surgery pictures were too much! Hopefully you have learnt something and if you have excision surgery coming up then do not be afraid of it. It really isn’t that bad (well my experience wasn’t anyway!). I hope this post helps you to understand what has been done to me and what could be done to help you, if you suffer too. You need to make sure you see the right doctor who specialises in excision surgery. I cannot recommend Mr Khazali enough. Thank you so much Mr K for fixing me and giving me the hope that I might someday get to be a mummy 🙂
If you are looking to contact Mr Khazali his website is the link below. It has everything you need to know about endometriosis, treatments and how to get in contact with him. It also includes a very helpful section about conditions associated with endometriosis and explains what it all means. So check it out if you want more information about the condition.
Pre op selfie, post op selfie, and recovery selfie!!! And for those of you who have followed all my surgery blogs….. oh yes Chris’s PJs made a comeback for recovery…. couldn’t be without them!!! They are now looking very battered and may have to go in the bin….. hopefully I won’t need them again anytime soon.
I will leave you with my last thought for now….
If it’s meant to happen, it will happen at the right time for us
Sincerely, Shelly x x